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caw (@caw)

Diagnosed with Ameloblastoma

Head & Neck Cancer | Last Active: 3 days ago | Replies (74)

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@tomschwerdt

Hey @caw @colleenyoung

Just joined the community today. Being such a rare tumor, it's hard to find a place where you can have a good discussion with people who understand. Hope it's not too much of an info dump below:

My original ameloblastoma diagnosis was in 2007. Even getting a diagnosis from the biopsy took forever. The oral surgeon initially wanted to perform a resection and titanium plate, we settled on removing the tumor and as much margin as possible while keeping the basis for a normal mandible. Lost 2 teeth. After initial healing, had an autologous bone graft (from far back on my mandible, behind the last tooth), followed by 2 dental implants. After 5 years of followup panoramic X-rays I was pronounced "cured" and told I didn't need to keep up with the panos.

Looking back, that was a mistake – I should have pushed for an annual pano. Based on the pano I had at my dentist a couple of weeks ago, it's very likely back – but in two locations. I still don't regret having conservative surgery, but if the regrowth had been caught sooner/smaller it would have been easier to deal with.

Consulted with an oral surgeon already, now waiting to get the biopsies done and a confirmed diagnosis.

I've asked for genetic screening of the tumor – it appears that the majority of mandibular ameloblastomas are associated with the BRAF V600E mutation, and there are FDA approved drug treatments for some BRAF V600E initiated tumors: combined Dabrafenib-Tratmetinib. Unfortunately outside some very limited studies, nobody seems to be taking drug treatment approach. US studies have basically been 1-patient case studies. Biggest study I could find was 12 patients in Israel. Literally 100% of them had significant tumor shrinkage within 8 weeks. 10 of them had switched from a planned resection to jaw preservation surgery – and the other two were not far behind, likely to switch as well.

It seems to me that there really should be more effort in taking an oncology/drug approach to treating ameloblastomas, rather than an approach of pushing for radical surgery as a first line treatment.

– BRAF inhibitor: a novel therapy for ameloblastoma in mandible https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6328504/
– BRAF-targeted therapy for locally advanced ameloblastoma of the mandible: A potential neoadjuvant strategy. https://ascopubs.org/doi/abs/10.1200/JCO.2022.40.16_suppl.3149
– FDA grants accelerated approval to dabrafenib in combination with trametinib for unresectable or metastatic solid tumors with BRAF V600E mutation https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-dabrafenib-combination-trametinib-unresectable-or-metastatic-solid

I admit, the full resection scares me. Oral surgeon was already talking about removal of nearly the entire left side of my mandible, fibular flap, etc.

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Replies to "Hey @caw @colleenyoung Just joined the community today. Being such a rare tumor, it's hard to..."

I'm sorry you are going through this. In my case, the tumor was already so large and had penetrated through the mandible, a conservative approach wasn't an option for me. I would be curious to hear what my surgeons have to say about the BRAF therapies. I'll have to ask when I go for follow up this fall.